This post won’t have many details because we need time to process, but we met with the oncologist this afternoon who gave us the results of the pathology test. I won’t write the name right now because truthfully I don’t know where the sheet of paper is and the truth is it doesn’t matter. He has a very rare type of cancer and the treatment currently available is more about prolonging life rather than surviving. We only have the diagnosis right now and a brief summary of the type of treatment he would have to endure (chemo + radiation + transplant + possibly more). The medical team here is awesome and we’re seeking out all kinds of opinions and research and see anything and everything that is out there but the truth is with this diagnosis we will also need to consider the option of no treatment and his quality of life with/without treatment. 

For now, the neuro-surgical team has given us the clearance that we can go home today. We’ve taken that option and will be getting Kai ready to go home. 

Please pray for God to heal Kai. Please pray for a miracle. Please pray that God will give Shawn and I the guidance on what the best next step for Kai is regarding treatment. Please pray for joy for Kai. 

Thank you so so much for your support. This fight isn’t over. This fight is for life. 

After a pretty rough night for Kai dealing with some of the side effects of the steroids he is on that are helping him with managing the swelling and inflammation, Kai had an awesome day.

Getting this wheelchair has given new life to Kai – I think we went on 6-7 “walks” in the hospital today. It was so windy today (up to 45 mph gusts) so we couldn’t go outside, but we’d go and see the sun in the windows and take his visitors for walks asking different people to push him in the wheelchair. Kai also got to finally take a shower after about a week and several days of Neosporin hair – contrary to popular belief, Neosporin not so great as a hairstyling product. He asked to put on his firetruck tshirt (thanks Nicco!) and his own pants and even brushed his teeth. I know this may sound cliche but holy moly, am I ever re-learning the lesson of how beautiful and life-changing he small things can be.

Kai made great strides with the occupational therapist too – he sat up on his own using his elbow and arms to help him up so he could do a puzzle and I think this gave him new confidence and he would try again and again if we could find good motivation such as when we just couldn’t figure out which car was Lightning McQueen or Mater or if Thomas the Train was red or blue.

We are so thankful for so many moments today and Kai had a peaceful nap today and right now he’s only moaned a little bit while trying to sleep which is amazing. Thank you God for a wonderful day with Kai monkey. I want to remember the way it felt to give him that hug when he sat up without pain and how he gave us high fives and made a “funny” face for Sheerin when she wanted to take his picture. I know that things are going to get a great deal more tangible (read: makes my stomach turn upside down) on learning what Kai will have to go through, but I want to try to see the life and love in these days – I know I’m going to struggle with this, I don’t want him to suffer anymore than he already has, but this is part of his story. And Kai’s story is one of life.

It has to be. 

He’s a little stinker and feisty and kind and thoughtful. And Lord please help Shawn and I and all those who care about him, walk with Kai in this so that he only feels lifted up, loved and comforted. Let Kai know that Love wins and that he can have that peace in his heart.

Thank you again so so much for all of your prayers and support today – you helped Kai make great great strides!